Special Needs Marraige

“The stress of raising an autistic child also takes a toll on many marriages. Autism Speaks, the nation's largest autism advocacy organization, reports that the divorce rate within the autism community is staggering. According to their research, 80 percent of all marriages end.”

I have seen this stat virtually everywhere, heard it even more places and for that matter used it myself. It can be found on the Oprah.com website.

I searched this evening online to see what the actual study said; what the details were, the population, the ages of the children, the ages of the parents, the length of time studied, and honestly I can’t find anything. Well, that’s not entirely true, I found a TON of articles talking about how they couldn’t find a study to prove this quote on the Oprah.com site either.

I have been thinking a lot about marriage lately – specifically special needs parents attempting to make a marriage work in between taking care of a child who demands so much of their time, attention, energy, creativity and emotion.

This is the topic of March 1st’s First Things First article written by Chynna Laird (which obviously isn’t out yet, but will be on Monday, until then you can see her interview here), so with that fresh in my mind I have begun to think about how important it is to spend time focusing on ways I can support my marriage.

I can think of many ways, and could even write you a list, but really, the simplest answer is usually the best one right?

The easiest way I think you can support your marraige is simply by talking about something OTHER than your kids.

My husband is on a plane flying home from work as I type this. As strange as that sounds, he spent the day in San Francisco at the Chinese Embassy getting his last minute Visa paperwork together for a two week trip to Asia next month.

We got to talk on the phone around lunch time. I had dropped Matt off at school and was RUSHING to get my hair cut (first time since October) before I have my author photos taken on Sunday. I sat in the parking lot talking to him on my cellphone.

Jeff talked to me about China town, the cool pagodas, and how close he was to Fisherman’s Warf. He had spent the morning with a friend from work, the two of them preparing for their trip to Asia, having lunch, taking meetings by phone, and enjoying their day with the extra long commute.

I talked about the errands I needed to run, the funny things the boys had said during the day, and how Matt had eaten 7 cookies for lunch – much to my annoyance, then hurried off the phone, because if I didn’t hurry, I wouldn’t be done in time to get the boys off the bus.

Sure on the surface it sounds like Jeff has the cooler life. And arguably he probably does. But that's not the point.

The point is that making the time to talk to each other and be involved in one another’s life aside from the chidlren, is what matters.

It is too easy to get caught in that constant communication loop that is centered around updates on the children -- no matter what their challenges are.

Being a couple means spending time talking to each other about each other. Remember when you were dating? You didn't sit around and solve problems during every meal. You just talked about how much you'd love to visit Chile, or about a new book you want to read, or about the latest office romance. You talked about your own life.

Here is my advice, shelve the discussions about your child's needs, or wants, and your worries associated with them for the weekend. Instead talk about things you and your spouse actually enjoy. You do remember what that is, right?

As for Oprah.com and Autism Speaks's "80%" divorce rate stat, in the words of my mom, “Don’t make shit up.”


Photo: A super close up of the shell picees pilled up on the beach in Mexico (where we didn't talk about our kiddo's issues once!).

Birthday Party Nausea

Gabriel was invited to a birthday party for one of the boys in his class. The party is this weekend and I have made the decision he isn’t going.

Why would I decide against a birthday party when we are NEVER invited to parties and would LOVE to be?

The answer is simple and very complex. I am afraid.

Truthfully, the decision came over a lot of tears (why am I crying so much lately? No, I am NOT pregnant, don’t even suggest such a thing) and a more-heated-then-I-would’ve-liked conversation with my husband.

Here are my problems with the party:

Every kid in the class was invited and you all know that when this happens, I have no real way of knowing whether or not this kid actually wants to be friends with my kid, if he really wanted Gabe, specifically, to come to the party, or if he even likes my kid. Worse, does this kid wish my kid wouldn’t come? Birthday Kid’s Mom: Hey son, Gabriel is coming to your party! Birthday Kid: BOOO! I wished he wouldn’t come! *sigh*

The party, as previously mentioned, is being held for the ENTIRE class: This means that there could be 20+ kids there, plus whoever is considered ‘family friends’ or ‘neighborhood friends’ or even just extended family of the birthday kid. LOTS of people. Never good for my sensory kiddo.

The party is “Laser Tag/Video Game” themed: You may think that sounds fine, maybe even fun, especially for 8 year old boys, but this is the company that is sponsoring it: http://www.g2u.com/. And aside for being over-kill in my opinion for 8 year olds, their set up is a ‘mobile’ gaming truck that comes with video stations and provides the semi-automatic-weapon-looking Laser Tag guns that each child gets. Now you may start to understand why I am a little nervous.

Gaming and guns are not my son’s strong suit: I am not saying he isn’t a good shot (lots of Star Wars play at my house), or even that I am against gun play as a whole. No, what I am saying is that when Gabriel plays video games, he gets a little obsessive. Maybe he gets too into the game. Also, fairness and cheating cause problems for him. Add a game like laser tag, with explicit and implicit rules and team dynamics that I know he won't/can't immediately pick up on, and it would require a great deal of restraint on his part. Heck, what if they picked teams? What a nightmare that would be.

And what if he ‘shot’ someone and it registered that he didn’t? Or he missed, but THOUGHT he shot the kid, and was terribly pissed off that it wasn’t ‘fair’ and that the other kid was ‘cheating’? That is totally likely – not just probable. Those are big triggers for Gabe.

Can I take the chance that, knowing this is a bad environment, and knowing that he may or may not be really wanted at the party, and knowing that he would be on overload, can I take him anyway? I say no. Jeff didn’t agree.

So here is the debate my husband and I had:

Jeff thinks that Gabriel would ‘hold it together’ for the party. That the social pressure would keep him following along with the status quo and that it would be fun for him. Maybe even socially elevating. Even if he had a meltdown.

“You know that isn’t the part he remembers. He remembers he had a good time.” Jeff insists.

“But I remember the meltdown. And the parents remember. And their kids remember.” I argue.

“Who cares what they remember?” He says in his black and white way. Jeff sees no grey area in worrying about what other people think in this case. He has learned, as have I, that we aren’t going to change Gabriel, so Jeff kind of takes the, if they don’t like my kid, F ‘em, approach.

The truth is that I do care. Because Gabriel cares. Not when he is having a meltdown, but later, when he has no friends, and I have to explain to him that his behavior in public can make it hard for kids to be friends with him. That he has to try and make the kids want to be his friend (we are talking the most basic of ways, like letting the other child have a turn, or letting their ideas be tried during play, etc.).

I try to arrange a play date with kids from his school, one on one, where Gabriel has the chance to ‘shine’. Where he can be at his best, where they can play and do things that Gabriel will succeed at. So those kids can see there is more to Gabriel than just a quirky kid who is terribly behind academically. I work for that.

And one birthday party induced meltdown could ruin it. For both of us.

Jeff wasn’t convinced.

“So what if he has a meltdown? You know how to handle it. That's nothing new.”

“So what?! If he has a meltdown, that would be something else that those kids could hold against him. At this point, he is quirky and strange to them, a bully too, but they haven’t seen him lose it. That would suck for Gabriel. After my almost-9 year old cries over his need for things to be 'fair' in front of his entire class and their parents, throws the gun at someone—or worse yet points it at them and in his usual daggers-out-of-the-eyes-way yells, “I’m GOING TO KILL YOU!” then I have gone backwards in trying to help him. That’s SO WHAT.”

I am fuming. Angry that Jeff doesn’t see how hard I am working for this. Gabriel wants friends so badly and he needs my help.

“I’m just saying that it wouldn’t change as much as you think. And I don’t think he is going to meltdown. That doesn't usually happen.”

“OH, but it does. Do you remember in first grade, when he had a meltdown at school over the teacher accusing him of touching the stapler?” I am really crying by this point. I think because I feel like Jeff is over-simplifying something. But in retrospect, maybe I was making a mountain out of this mole hill.

“Yes, I do.” He stands, with his arms crossed over his chest, looking at me calmly through my office door as I get more and more upset.

“Well, those PARENTS called my house and demanded that they know things about my kid—his whole medical history. Those PARENTS called my child dangerous and tried to hold ‘secret’ meetings with the Principal to get him sent to the full inclusion room, to get him kicked out of his classroom!!”

I have bad memories of this, which were recently stirred up again when Gabriel brought this event up at our appointment with Dr. King, making clear that the teacher and other students were the liars, and that Gabriel didn’t touch the stapler; just was accused of doing so.

Jeff wasn’t convinced this was an argument not to attend a birthday party.

I wasn’t either, but it was really clear to me as our argument continued, and eventually gave way to Jeff saying he was open to whatever I decided, that I was afraid.

The plain fact here is that I'm affraid. Maybe I care more than Gabriel, maybe I don’t. But it is me that will be here picking up the pieces (Jeff is in class when the party is, so he won’t be home) when things go well, or not. I can’t take the risk that my son will lose it and it will be another two steps back socially.

It is a HUGE emotional risk for me.

And then the tears are not for my frustration with my husband not understanding any more, now they are for the fact that Jeff does understand, he understands this is about me. Not just Gabe.

Watching Gabriel get older scares me. It really does.

As he is given the opportunity to spread his wings, there are times that I am not sure how I am going to know when he is ready to fly. Maybe he is ready for this party, and it is just me holding him back. I definitely seem to carry more emotional scar tissue than he does from the years of special needs parenting, but I am not sure that makes me more or less able to make these decisions day to day, or year to year.

There isn’t a manual for parenting a kid like mine. You can’t look at other parents for guidance, you can’t do things without thinking, and doing what your parents did with you is probably not going to work.

Which leaves me making the best decisions I can and moving forward.

The one thing that has always worked is following my gut. And not that sick feeling that comes when you think you’ve made the wrong decision. I am talking intuition.

And today, my intuition says that this birthday party is not a good idea. So, we’re staying home.

There will be more chances for him to spread his wings and I trust I will know when the right time is to let him soar.

Photo: Gabe's 8th Birthday, May 2009

Header: Did you see my new header? I LOVE it! :)

Sensory Tools Made "Cool" by Fun and Function (Aviva Weiss)

I came across this amazing new website, http://www.funandfunction.com/, that offers great sensory toys and tools for your home or therapy center (for all you OT/PTs out there!) and was even more excited to find out that the owner/found is not only an Occupational Therapist herself, but has a child with Sensory Processing Disorder (not to mention 4 other kiddos including a 6 week old--ah, hello supermom!).

She has offered to tell us more about her family and her business, and is offering HLW3B readers a 10% discount off their purchases. A discount on therapy toys -- hmmm -- almost better than a new handbag, huh? LOL Here we go!

Hi Aviva! Welcome to HLW3B. I am very excited to talk about your website and how it is making the lives of special needs kids ‘cooler’, but first tell me a little about yourself. How did you come to start a business that caters to kiddos like mine with Sensory Processing Disorder?

Thanks, Hartley for this opportunity! I was inspired to create Fun and Function when I learned my own daughter was challenged with Sensory Processing Disorder, and I was turned off by the high prices and unaesthetic products that she needed for therapy. I began designing my own line, and realized many other parents also wanted an alternative to clinical-looking and costly products.

There are so many amazingly fun and innovative products on your website, but I am very intrigued by the “Exclusive” items you have—especially the dressing vests that look like Police officers and Princesses (I totally want the Police Officer one—very cool!). Where do you find such great items for your site?

I worked with a fashion designer to create the dress-up vests, which we call our Magical Apparel line! It's magical because all children can play dress-up together, and those who need sensory input can place weights in the interior pockets, without missing a beat. The easy-to-grasp buttons, snaps, and zippers offer practice dressing too. As an occupational therapist and mother of five young children, I often come up with too many ideas that I would love to bring to fruition. The hard part is waiting for the ideas to become a reality! Many of the exclusive products are designed and manufactured by Fun and Function. To add to our offering, I also spend a significant amount of time searching for other innovative toys and products which stimulate development and function in children of all abilities.

I commented on your Facebook page where you were asking for input from SPD parents about what kinds of products they want to see in your upcoming 2011 catalog (can't pass up the opportunity to put my two cents in); what a smart idea to ask the people who USE these items at home what they want! Can you disclose any secrets about upcoming new items? I am dying to know!

Our goal for 2011 is to offer a wide variety of products that are selected and voted for by our parents, therapists and of course, children. I might like something from my perspective as an occupational therapist and mom, but there are many other solid opinions out there and I want to hear them. In general our approach to all feedback and ideas is “bring ‘em on!” It makes us better at what we do.

In terms of new products, we are working on some very, very cool social/emotional games with content that is user generated. You and your readers can contribute to the games by joining the discussion on our Facebook page and share what situations trigger emotional reactions from your child. We are also developing a line of functional wearable chewies ( I’ll leave the rest a secret) and calming, comfortable clothing that is designed and voted on by children on http://www.bykidsonly.com/

I hear often from friends and fellow special needs moms that they wish there was a local place to purchase these kinds of items. I was impressed to see that you are not only in some retail locations, but that you offer the ability to become a Consultant for your products. Becoming a Consultant sounds like an amazing opportunity for parents like me to make some extra money while sharing and selling products that directly contribute to the well being of other special needs families! Please tell me more about how Consultants help your business, and how some of my readers may benefit from becoming one.

We recognize that people love to touch-and-feel the products before committing to purchase, and we offer this opportunity through our Consultants. There's an added benefit too: when our Consultants demo the products at events like house parties and in service presentations at schools, families and professionals are able to connect and share their knowledge and tips of what's worked for them.

Some of our consultants have day jobs as therapists and many are moms. They're attracted by the extra income of selling products that they really believe in. From a business perspective, our Consultants give us another touch point to understand the range of customer needs, and we gain a bigger footprint across the US.

You can find more information at about how to become a Consultant by clicking the link and reading about it on our site. I would love to have more amazing people join the Fun and Function team!

Thank you Aviva for taking the time out to share with us about your family and your business. Can you tell me where to connect with you? Facebook? Twitter? And also, I hear you are willing to give HLW3B readers a discount?! Tell us about that too! :)

Thank you! It is great meeting other parents with similar passions! You can find us on Facebook at facebook.com/FunandFunctionFans and on Twitter @FunandFunction We are thrilled to offer a 10% discount to your fans just enter code HLW3B in the first discount coupon box upon checkout. Have a great day!


A special thanks to Aviva again; another sensational mom helping sensational kids! She just welcomed her 5th child into their family too, so congratulations on little Sam and another BIG congratulations on the work you are doing to make special needs "cool"!

I hope you will all be able to benefit from the discount code, and take a close look at the great and unique products that Fun and Function has to offer. I am thinking the boys might just get those adorable Magic Dressing Vests in their Easter Baskets, what about you?


Even MORE ways you know you have an SPD kiddo…

1. You have a collection of twisty straws that should be sold to a toy museum (even though they still have applesauce stuck in them)

2. You still buy Velcro shoes for your 8 year old because he has to continually tighten his shoes all day and doesn’t have the small motor skills to tie them

3. You go through a new toothbrush every week not because they are being used to brush teeth, but because they are used as a chew toy (instead of the real chew toys you have spent hundreds on!)

4. You know that OT doesn’t mean Over Time

5. You have lists of new therapies you want to try, but no extra time, energy or money to actually do them

6. You know what a “no thank you bite” is

7. You are constantly reminding your kid through gritted teeth at the grocery store to “keep your hands in your pockets!" but he still touches everything

8. You have researched every school within driving distance of your home (and some too far away to realistically be considered) in an attempt to avoid having to shove your “square peg” kid into the “round hole” of public schooling

9. You’ve considered homeschooling – and maybe even attempted it

10. You are an expert at finding seams in clothing

11. Your child refuses to wear a coat – even though it is below freezing outside -- but you are OK with it

12. You have attempted to explain the definition of proprioception to at least ten family members, all of which still don’t get it

13. Your child doesn’t eat sitting down; no, he has to stand, dance, jump, spin and bounce during dinner – and you’ve learned to live with it!

14. You have long since thrown out the darling dresses and adorable bows you once thought your daughter would wear, since she’ll only wear sweatpants

15. You spend your spare time looking up things like CAPD and NVLD

16. You know what CAPD and NVLD stand for

17. When you tell your child it is time to “brush” you aren’t talking about his teeth

18. Bath time is a war zone – either your kid is attempting to become one with the water or refuses to get wet all together

19. You talk about “engines” all day long but know nothing about cars

20. If you could just convince your kindergartner to ASK the other kids not to sit too close, you would stop getting calls from his teacher about him pushing, hitting and kicking

21. You are tired of explaining that your child does not have “behavior issues”, but rather sensory issues that affect his behavior

22. You know, unlike most of those “helpful” strangers that give you unsolicited advice, that if you child could do better, he would

23. You have joined SensoryPlanet.com and finally realize you are NOT alone

24. You follow Dr. Lucy Jane Miller’s DSM updates with greater interest than current affairs, movie releases or fashion trends

25. You STILL haven’t had any time alone

26. You spent more time planning for your child’s 504 meeting (because they don’t qualify for IEP with just SPD), than you did your own wedding

27. You aren’t on Facebook to connect with lost high school friends as you originally intended

28. You wouldn’t tell anyone this, but your 6 year old (or 7, or 8, or …) still sucks a pacifier or his thumb at night to go to sleep

29. You have an ear-marked copy of The Out-of-Sync Child on your nightstand at the ready for late-night epiphanies

30. You dread taking your child to the dentist more than paying your taxes

31. You know that Sensory Diet has nothing to do with eating and is probably the most important ‘diet’ you'll ever do

32. You can name 100 things your child can do for heavy work at school, but are surprised that the teacher can’t remember even one

33. Unlike other kids, your child actually acts better when he has a fever

34. You used to browse the newest bags at Coach.com but now you spend more time “dreaming” over the latest from Southpawenterprises.com

35. You have still yet to come up with a quick response as to what is going on with your child

36. You have quit your job to stay home and take care of your child’s ever-increasing needs (and appointments) even though you can't afford to

37. Your insurance co-pays are more per month than your property taxes

38. You are no longer surprised when your child greets someone by crashing into them full force

39. You hear other women talk about the next Twilight movie, but you are just hoping for a
sequel to Autistic Like: Graham’s Story

40. You beam with pride when your child asks to be squeezed or chooses to swing without being told

The Next Chapter Begins (again)

I wanted to update everyone on our appointment with Dr. King yesterday. I will spare you the anticipation and get straight to the answer: the official word is "classic Bipolar" or Bipolar I. The early onset version, since, obviously, Gabe is a child.

Here is the nitty gritty of Thursday.

I picked Gabriel up from school, dropped off the Valentine's Day gifts to my boys' teachers and rushed into the van to drive Gabriel the 30 minutes to Dr. King's Seattle office.

We arrived, greeted by Jeff (my hubby) in the parking lot and headed in to wait in the waiting room, a fairly large room in what appears from the outside to be an office building. On the inside of that strangely plain exterior is an office of Autism experts that rival those anywhere.

Once inside, I check Gabriel in, only to find out my hubby already did that. Jeff laughs at me and is instantly in his I-can-only-be-sarcastic personality which surfaces in every medical situation. Some cry, some get angry, Jeff gets sarcastic.

We watch the fish tank. I only pretended.

Really, I am watching the other families in the waiting room. Carefully checking out every child. I smile at the other moms, casually, when they see I am watching their child, and his or her quirks with a sense of connection.

One boy plays puzzles on the floor and refuses to go back to see the doctor when it is his turn. His doctor, Dr. Stobbe, who is also our neurologist (and the man that diagnosed Gabriel's Autism last year) smiles his unphased-smile at the boy and his parents, and insists that it is fine if the child wants to finish his puzzle. I am quickly reminded how much I love that man. That smile is the look of understanding--not sympathy, not empathy, not compassion or pitty -- but understanding. He gets our kids.

Another family has a daughter, a little older than Gabriel, maybe 12 who is yelling some and has a very unemotional look on her face. She looks exactly like her father, who appears a little uneasy in the room -- he is smiling nervously, a little larger than he should, but at least I get to see exactly what his daughter's smile would look like.

Another family sits in the back, with their daughter, maybe 5, sleeping on the floor. But I am pretty sure it was the teenage boy with the ear phones on that was the patient.

It doesn't take long to realize we are going to wait longer than anticipated in the waiting room. I call my neighbor and good friend and ask her to get Nick off the bus, but assure her I will be back in time to get Matt. Especially since I haven't listed her as an emergency contact, so I am not sure they would release him to her anyway. She agrees no problem. I have the best friends.

At about 20 after Dr. King comes out, with another woman trailing him.

Dr. King is unassuming, dressed in a tie, with greying hair and a very warm smile. He introduces himself to Jeff and I as "Bryan King", but to Gabe he refers to himself as only "Bryan". At this Gabriel reaches out his left hand to shake Bryan's all while clutching two stuffed lions (he smuggled the second one into the office by hiding it in the plastic tub of army men--damn, I should've checked) and the plastic tub of army men and softly says, "I'm Gabe."

Dr. King introduces us to the woman with him as a colleague visiting from Minnesota who is there to observe and learn how he works.

We do a quick height and weight on Gabriel, and then off to his office.

We sit down in his office on a strange plastic feeling small couch with stars on it and the first thing he says is, "It looks like you haven't had good luck with doctors here in the past." With a smile and reference to Gabriel's head injury.

I look at him and run backwards in my mind until Gabriel was 2 and we had his follow up appointment after his head injury with a neurologist who said everything was fine and dismissed my concerns. He actually made me feel stupid when I saw him. I laughed and told Dr. King a little of our encounter with that doctor.

"He wrote in the chart that Gabriel had "normal development." And laughed that same calm I-get-the-inside-joke laugh as before. "It is even strange that he would write that phrase."

I immediately like this guy. :)

We talk a lot, about Gabriel's challenges, the changes in his mood swings and cycles over the last year and he is asking questions along the way. He asks Gabriel some questions, all of which Gabriel responds "correctly" to (gives the answer he thinks you are looking for) and again Dr. King seemed to clearly understand that is what Gabriel was doing.

He asks a few questions to the other doctor who was visiting. At one point he asks her if she sees anything besides Bipolar that might be going on. She says, "I keep thinking attachment."

I think, Seriously lady? Just because he is adopted doesn't mean he isn't attached.

Dr. King politely dismisses her suggestion and with that I move from liking him to loving him.

We go through more of the things that have gone on in Gabriel's short life and Jeff peppers the conversation with sarcastic remarks. Dr. King appears concerned (about Gabriel, but rather entertained at Jeff), recaps to clarify and has legitimately read all of Gabriel's medical history dating back prior to his placement with us.

We start to talk about medication, and Dr. King assures us that Gabriel's history of responding positively to medicine is a great sign and very encouraging. He suggests that we try an A-Typical Anti-Psychotic (he assures me the name of the medicine is scarier than what we are treating) and suggests a TINY dose (1/8 of a ml -- literally a drop) for a week to determine if we see any results -- positive or negative before deciding to jump into the med full force.

Jeff and I are on board. This is what we expected.

Dr. King asks his colleague a few more questions, and at one point she shifted her weight in her chair and said with an uneasy laugh, "This is really complicated."

Amen Sister.

We leave the appointment with high spirits. All of us. And except for the fact that I am rushing to dial my friend back and crossing my fingers she will be able to get Matt off the bus too (which she agrees to and is successful at), I am not stressed any more.

My husband says to me later, "I liked him. He didn't seem phased by what we said. Like he had heard all of this before and knows what he is doing."

Even though I have a sneaking suspicion that Jeff liked Dr. King because he laughed at his inappropriate, yet on going, sarcastic commentary, I liked him too. Dr. King does know what he is doing and has done this before. The best two things you could ask for in a doctor if you ask me.

We got home with a renewed sense of hope. Because, after all, that is all any of us have as parents: Hope.

Now, before I close this post, I want to assure you that I came home and cried. A lot. Cried as a part of the mourning, as part of the release of emotion and as part of the cleansing. But now it is time to wash away the fear and move on.

Since we can't get the new medicine until Monday (not in stock and will have to be ordered), I will report how things go in the next week or two.

Until then, thank you all for supporting me (and my family) and Happy Valentine's Day!

Photo: Gabriel waiting his turn to play Ping Pong in Mexico beachside.

Let The Griveing Process Begin (again)

As most of you know, Gabriel is a very complex child full of many acronyms and challenges. That said, our biggest hurdle in the last two years has definitely been his mood swings. Because of those issues, and his other destructive and dangerous behaviors we are going to see Dr. King.

Dr. King has been touted as "the" leading expert here in the Seattle area on child psychiatry. He is the expert psychiatrist for children with autism. He is the last word on diagnosis as far as the state is concerned (legal, educational, etc) and we are beyond honored to be able to see him tomorrow.

That also comes with some sense of getting a definitive answer or diagnosis. It is hard for doctors to want to label a child with Bipolar at such a young age, but in this case, I think they will. Actually, I will be surprised to hear anything else given that Gabriel's birth mother is reported to be Bipolar.

I am a little overwhelmed at the sheer thought of getting the diagnosis because it truly is a life sentence. A life of medication, hospitalization and continued psychiatric care.

I think it is fair to say that having a child with SPD, and High Functioning Autism is enough to keep me back and forth to doctors for the rest of my life, but this Bipolar thing is another beast all together.

The Bipolar Monster is something that will require the utmost dedication by our family to just keep Gabriel safe--alive--and out of jail.

My sweet boy, with the toothless smile, who really wants to be a great kid and has the most golden of hearts, will continue to fight this battle in his brain for the rest of his life.

I am just being honest when I say that this impending appointment has me grieving this (potential) newest diagnosis in what feels like a never ending string of letters.

As a mom of a child with special needs I often question my ability to do this. Sometimes I feel the stress is too great, sometimes I feel I am not qualified or educated enough, sometimes I feel like the worst parent on the planet for not being more patient, more saintly or flat out happier for what I have. Not every day is roses. Not every day feels like a blessing.

I find strength through other parents out there--those who I read about on their blogs, and those who I have the pleasure of meeting in person. But, no matter how much I fill myself up, and find support for me, I am still not positive I can do this for the rest of my life.

Don't hear me wrong -- I WILL do this. Yes, we special needs moms never quit, and this isn't the time I will either, but really, how much can one person (kid) take?

Grieving is a process. It has steps, which must be followed. And although I am no grief expert, I have charted this territory before, time and time again, with each new thing that I am faced with in response to my son's treatment or prognosis and this will be no different.

The 5 Stages of Grief


Each step means something different for the person experiencing the loss. Each acronym may represent grieving the loss of a dream or perhaps the loss of what you *thought* your future or your child's future would hold. But each of us has to experience this grief in our own time, careful not to get stuck on one step for too long (that is when you need to seek counseling for yourself), but sure to go through each step.

I think my tears come from being on the cusp of Acceptance. I have been grieving this diagnosis since we first heard it when Gabriel was 4. I believed that since he could successfully be on anti-anxiety meds that he wasn't Bipolar--a suggestion that the meds might push him to mania if he was Bipolar (which apparently is common, but I am NO expert) which didn't happen--meant he wasn't Bipolar in my myopic view. So I shelved the diagnosis.

But, then that word kept surfacing during all my late night Googling sessions -- you know what I am talking about -- where us moms start to enter symptoms into a Google search box with the theory that Google is the best MD in the world. I learned a little more, a little more, a little more and all of those light bulb moments brought me to Dr. Stobbe (which is now Seattle Children's Autism) just over a year ago and again the word Bipolar was used. Carefully.

I was told he didn't have the traditional two cycles a year--that he was only NOT stable in Spring. But, they still opted to give him Trileptal which is a mood stabilizer used for Bipolar. And it has worked wonders.

Then this last year Gabriel had his first manic cycle in fall -- anger and aggression that started around October and peeked the first week of December (read that post here). I thought we would have to hospitalize him, but we got an emergency appointment with Dr. Stobbe and the term Bipolar came up again while we increased his meds.

I am no stranger to the idea that my son could be Bipolar. But the Acceptance of him being Bipolar is another thing all together.

Gabriel is excitedly anticipating meeting Dr. King tomorrow. With a name like "King" Gabriel is really hoping this man can perform miracles and I'd be lying to say I didn't have the same hope.

Gabriel recently told me he couldn't wait to see Dr. King, and when I asked him why, he said,

"I want to ask him how to stop the fits from coming."

"You could go to your room and calm down." Nick says, obviously smarter than Dr. King.

Gabriel got angry, "NO NICK! That's not what I mean!"

"You mean that you want to not have the fit at ALL, right? You don't need to know what to do when you are having a fit, but rather want to stop them from happening." I said.

"Yes. I don't want to have the fit EVER." Says Gabriel.

He is in mental pain--mental agony from this. It takes over his brain and he can't shut it out. It worries me. To. No. End.

So I will leave you today, wishing you all well in your grieving process, no matter which step you are on. Take a minute today to think about all you have accomplished with your child, and allow yourself to move towards Acceptance while I do the same.


Sleep Issues

Sleep is something that we all take for granted, as long as we are getting it. If we don’t get enough sleep, we are cranky, sleepy, quick to anger and plain grouchy. But, we have a solution: Caffeine. Or at least that is my solution.

Our kids are in the same boat: as difficult as it is for them to regulate themselves, can you imagine how they do it when they don’t have enough sleep? And they can’t drink coffee. It must be like medieval torture for them.

I recently talked with a fellow parent, who has a baby that has already been identified as having SPD (Yay! Early Intervention Rocks!) and is struggling with getting the baby to sleep, let alone sleep through the night. During our conversation, I was immediately reminded of all of my own kids’ sleep issues and how far we’ve come. Proof, yet again, that things do get better with time.

Let’s run down my 3 sleep-challenged-kiddos.

It only seems fitting that Gabe is first.

From the time Gabe was placed with us at just over 13 months, he was attached to his bottle. But only when he was tired; I gave him a morning bottle and nighttime bottle. I quickly realized he wanted the bottle to sleep with, and that it gave him the soothing he needed to fall asleep and more importantly stay asleep. It was like magic; stick bottle into his mouth, he is asleep. Remove bottle from mouth, he is awake. He was so small, and young, and Jeff and I figured, “If all he has in life to feel safe is a bottle, who are we to take it from him?” So, against our better "know it all" judgement, we put him to sleep with a bottle of water nightly. We let him have his bed-time-water-bottle in his crib from the time he was a year until … about 2 years when I put an abrupt halt on it.

Why the abrupt halt? Well, he was my first child, and since I didn’t have him as an infant, I was completely sure that taking the bottle from him was the "right thing to do". I mean, I'd read the books, and by the time he was almost two, I was trying to adopt him. Which meant to me at the time, "righting the wrongs" his birth mother had done, including the bottle in bed issue.

But, that dedication to my preconceived notions isn't what put me over the edge. No it was Gabriel's relentless need for water ALL NIGHT LONG.

He would wake up multiple times a night due to him peeing through his pajamas and bedding. When I would enter his room to help, he would throw his empty bottle at me, which just irritated me, especially since I then had to change his pajamas and bedding all while dealing with him screaming and crying in his between awake and asleep state. It was annoying at best.

We didn’t have a diagnosis at the time, so that led me in my omniscient ways to try the “Ferberize” method. Big joke.

Although this didn’t go nearly as badly as you’d think, what I realize in retrospect was that I hadn’t weaned him from the bottle, I had just forced him to find something else for oral input: enter the infamous Hippo Blanket.

Gabriel, now almost 9, STILL CHEWS on his Hippo Blanket to put himself to sleep.

When he was 2, in my utter genius, I failed to realize that he hadn’t stopped SUCKING on something to soothe himself, he had just changed from bottle to blanket because there wasn’t anything else in his crib and he NEEDED something. What I learned from that was that Gabriel NEEDS something in his mouth to self soothe. This need doesn’t fall under “will grow out of it”, we are talking about the way his neurons are wired.

It wasn’t until Gabriel was 3.5 that we started to really worry about his sleeping. He would come home from preschool, and nap for up to 4 hours, and still go to bed on time and sleep another 10. That sounds amazing to all of you who didn’t get a “natural born sleeper”, but we had other issues.

Gabriel would scream, upon waking from nap or in the morning, for at least 45 minutes. If I intervened, touched him, talked to him, moved him, forced him to get up, anything, the crying and screaming could last up to 2+ hours.

And the exact same issue would come on right after dinner time when he was getting tired.
The reality was that he couldn’t handle the transition from awake to asleep, or asleep to awake. This made for a level of stress that I could barely handle.

We went in for a sleep study, and actually made it through the entire process right up to the actual test when we backed out.

We had two reasons for backing out: 1. I was pregnant with Matthew and Gabriel wanted ME to stay the night with him, and I couldn’t imagine not being the one there, which was virtually impossible being nearly 9 months pregnant, and 2. The crying had lessened substantially—virtually disappeared overnight—when Gabriel started anti-anxiety meds. No comments from the peanut gallery on whether or not to give meds. For us, medication is a necessity that stems from his genetics (Bipolar birth mother) and was exacerbated by abuse and neglect.

Gabriel has used a heavy blanket (and so has Matthew on a few nights) to go to sleep in the past as well. I have found that the heavy blanket is a great tool for putting Gabe to sleep, but not one for keeping him asleep--he wakes up because it is too hot. When he is flipping out, I will often mandate that he has 20 minutes under the heavy blanket, in a dimly lit room. It puts him to sleep. Instantly.

Today Gabriel is a great sleeper, but we still fight the challenges from asleep to awake. He goes to sleep easily, but nightly can be heard yelling and screaming, complains of nightmares, and overall needs more sleep than the average bear. Every morning, I cringe to have to wake him, (mind you he sleeps at a minimum 11 hours a night, but on weekends, at nearly 9 years old, still can nap), because instead of crying like a 3 year old, he yells at me like a teenager. No fun. For either of us.

OK, next up is Nicholas.

Nick didn’t sleep as a baby. He didn’t sleep in the hospital, he didn’t sleep in the bassinet, he didn’t sleep in the crib, he pretty much didn’t sleep.

From the time he was born all he really wanted to do was eat—but that’s another post entirely. LOL

Nick would sleep in his infant car seat (especially if my husband swung it like a rocking chair), and he would sleep in his bouncer. Those were his two main beds up until he was 8 months old. My mom used to joke that once he was a toddler we were going to have to buy him a mini lazy boy because he was so used to sleeping upright. Given that he ended up sleeping in my bed after he out grew the infant carrier (by 5 months he was over 20lbs. and the car seat was used exclusively as a bed, not a car seat), the lazy boy might have been preferable.

From 8 months until about 14 months Nick slept with Jeff and me. Co-sleeping isn’t so much of a problem for me, but the challenge was I was pregnant then. I am sure there are hundreds if not thousands (all of whom probably read my blog, right? LOL) who had no problem co-sleeping with a toddler, while checking on a preschool and being pregnant at the same time. But, I am not one of them.

I was exhausted at the end of the day and all I really wanted was sleep. Pure, uninterrupted, sweet sleep. In my experience, this is rarely attainable with a child in your bed.

So we put Nick in a full sized bed in his room. With rails. And helped him to learn to sleep there. Of course this is no easy task. It involves me, lying with him, multiple times a night, after I had to return him to his own bed after he crawled in mine.

He didn’t sleep through the night until he as 2.5 and stopped napping. Thank god. At that point, Matthew had arrived.

Last but not least, Matthew

Matthew was a born sleeper. Really. As long as he was swaddled. And had a pacifier. But other than that, easy.

We swaddled him, in layers of blankets, with a Velcro sealed top layer every night, sometimes MULTIPLE times a night, until he was 8 months old. I actually took photos of him the first time he napped un-swaddled because I was so excited!

Around 6 months Matt was diagnosed with acid reflux, which medicine worked wonders for. He also loved his pacifier, which I was reluctant to take from him when he turned two, even though family and friends suggested--strongly--that I do. He ended up loosing all of his pacifiers, really, at about 2 and 3 months. But, he adjusted fine. Another example of how my "fear" of how my kids will transition is worse than the reality.

Matthew slept well, on and off, with normal kiddo issues until about age 3 when he was officially in a big boy bed. We went through the expected dose of putting him back in bed, since he could now officially get out, for about six months. Our high was around 37 times when I stopped counting.

Now in all seriousness, Matt was the easiest. That said, he is still the baby and is found once a week in our bed in the middle of the night at age 4. You can't win 'em all.

With all of this in mind, here are some tips you should try to get a better night sleep for you, and of course, your kid too!

Routine: You need to have an established routine, that begins at least 45 minutes before you want your kids in bed. Bath, teeth, medicine, 3 books, read in Matt’s room, boys to their beds, lights out five minutes later, is ours. We stick to it. Like glue.

No TV: To establish your routine, remove TV from what you are doing. It just isn’t a night time activity. Add it in when your kids have already established a good sleep routine. We can successfully watch TV with our kids for about 30 minutes after bath, but before the rest of routine. We can't skip the books or Matthew looses his mind and won't sleep for hours. He actually once told me, "It's all your fault." "What is all my fault?" I asked lying in bed with him, "I wanted you to read to me." Lovely. Hear that? If I screw up the routine, it is all my fault. No truer words have ever been spoken.

Proprioception: If your kid is wound up, running around isn’t going to “burn off the excess energy”. Get them to move furniture, use a heavy blanket, do pull ups/pushups, do “animal walks” like the crab or maybe joint compressions. The goal is to incorporate this into your night time routine (we do a lot of joint compressions/proprioception after bath while putting lotion on Gabriel’s skin).

Stick to a Bedtime: Your kids need a bedtime. My motto, with my kids on everything is, “If there isn’t a rule there can’t be an exception.” Which means they cannot stay up *most* nights, or enforcing the bedtime becomes the exception. You want the opposite. My kids get to stay up on Friday nights for Family Movie Night (which is popcorn and a movie in my bed on the “good TV”— the TV downstairs is older than dirt and a tube version, so they don’t damage it, more than they already have), but 25 out of 30 days they go to bed on time.

More Sleep: Your kids need more sleep than you think. I can tell you how many hours each of mine needs: Gabriel 11-12, Nick 9.5-10, Matt 10. If your kids are not getting the sleep they need, or they are fired up at bedtime, put them to bed EARLIER. Really. Chances are that they are OVER-tired. Overtired kids get up in the night, have night terrors, are more restless and harder to get to sleep.

Sleep Regular Hours: I know many families who are successful with putting their kids to bed at 10 or 11 at night, because they “sleep in”, but I think that is unusual. Put your kid to bed between 7:30 and 9:00pm. That way, if they get the 10 hours they probably need, they are awake at 7pm. If you need to be up earlier, then adjust. But, I would much prefer Gabe be awake at 7 and ready to go (I can deal with coming up with “waiting games”) then drag his butt out of bed bitchin’ and moanin’ at 8. We start routine around 7pm. They can play in the bath (this was a collaborative problem solving nightmare that we finally gave into—they like to have leisurely bathes), or shower, and then even have some quiet play time in their rooms if necessary while Matt finishes. Then to teeth, meds, and book reading by 8, so that we are done and lights out by 8:30pm. I still drag Gabe out of bed at 8am most days. I wish I could get him to bed earlier, but the other two don’t need that much sleep, making it hard to convince Gabe to go to bed when he is the only one going to sleep.
There really is no magic solution to bedtime. No matter how many books you read.

I try to just make the best decisions I can, not just the "easy short term" ones, and keep moving forward.

But that's easy for me to say, becuase I am well rested.

Photo: That is Gabriel at about 2.5 just after Nick was born. He is sleeping with his Hippo Blanket. Note that he still sleeps like this: on top of the covers with just his Hippo Blanket.

Rock Jars

In an attempt to further answer the age old question, "Is it sensory or is it behavior" I have devised a new behavior modification 'game'.

(evil laughter)

The game is very simple. You start with a Jar of Rocks, in your own color (black is Gabriel, yellowish/brown is Matt and the reddish/brown is Nick). For each time you break an existing rule, which have been predetermined by our family, written down and posted, you lose a rock from your jar. If you have any rocks left at the end of the period (5 day school week, and reset for weekends when they are home more), you earn a privilege: things like 'choose breakfast', 'choose family movie', 'choose a game to play', 'pick the playground', etc. Then we reset, and return all of the rocks to their jar.

Do I think this basic of all basic "star chart" type reward systems will work? Yes and no.

I believe it will be helpful for Matt, successful for Nick and a toss up for Gabriel.

I thought about doing many other options including the Wheel of Dreaded Consequences, which was quickly ruled out, star charts, point systems (which worked wonders for Nick'sreading success over the summer), and more, but thought the newness of this would be an added bonus--for the kids and for me.

Rocks were also a good choice for these reasons:

1. Sensory Friendly: Visual, tactile, heavy
2. It is easy to see how you are doing; no counting necessary
3. Reusable and Inexpensive (a one time cost of $4.50/jar to buy new at Michael's)

Now the obvious truth here is that no matter how well I use this system, it isn't going to answer the question "is it behavior or is it sensory" entirely.

But it is going to give me some clues as to what Gabriel has the ability to control (will he stop calling me a "dumbass" daily?) and what he can't.

The reality is that Gabe is easily motivated. I feel like I take advantage of that sometimes by giving too many 'threats': Stop or I'll...whatever. Not my favorite way of parenting and parenting a kid like mine is hard. I want to feel good at the end of the day that I did my best, and I am not feeling that way lately. I hope this Rock System eliminates the need for threats and constant reprimand. I can just say, "You lost a rock for that."

When we purchased our rocks and jars yesterday, as a group (all three kiddos and me) they enjoyed choosing which rocks were theirs and looking at all of the jars (never mind the panic attack I suffered having all three of them in an aisle dedicated to glass jars).

The challenge was that the rocks were sold by weight; not number of stones.

When we got home, and set up our little area on the counter, I started counting rocks into jars.

Nick has 10 rocks (one wouldn't fit)
Matt has 13 rocks
Gabe has 14 rocks

Nick didn't find this to be fair.

"Nick, how many times a day do you flip out?" I asked him.

"Ah, virtually none." He said with a smirk.

"What about Gabriel? How many times a day does he flip out?" I said.

"A LOT." He said.

"OK, then we see that Gabriel is going to need more chances than you are." I concluded.

"Yeah, I think so." Nick said.

And that was it -- the gods have spoken on how many chances each child gets. It is fair -- which is NOT to be confused with equal.

Example of Gabriel's Reasons to Lose a Rock:

1. Calling names
2. Hitting, biting, kicking
3. Throwing things
4. Breaking things

Example of Nick's Reasons to Lose a Rock:

1. Not following directions (ie "get your shoes on" or "clear your plate")
2. Ignoring me when I speak (this drives me crazy)

Example of Matt's Reasons to Lose a Rock:

1. Spitting
2. Throwing things
3. Spilling things intentionally (books, toys, drinks, popcorn, etc.)

The boys all have something to work on. Come to think of it, maybe I should get myself a jar too...*sigh*

I am hoping that this will be motivating for all of them and give me the motivation to be more consistent. I have successfully motivated Nick this way for years (the previous mentioned reading chart--more points for higher level books earned him a backpack of his choice this summer, as well as a "stay in bed" chart that earned him $40 over 6 weeks, all have worked wonders) but Gabe's behavior isn't as easily modified. And Matt...well...let's just say it is time to take a more 'formal' approach to his behavior modification.

I will keep you posted, but until then, I am truly happy with the aesthetic value of the Rock Jars on my counter. Is that weird?


FTF "A Jaw Dropping Experience" by Marla Roth-Fisch

Towards the end of summer in sunny Colorado, my entire family wanted to get one last outdoor swim in. My husband and I swam and played with the kids in the large pool, enjoying a game of keep away.

As my son jumped wildly with excitement to catch the water filled sponge ball, which almost careened our heads from the other team, (my husband and daughter), he accidentally elbowed me with a left jab to the right side of my face.

As I heard the crack in my jaw, I didn’t think much of it at the time, except that it hurt…a lot! I wanted to shrug it off as my son’s apologizes overflowed.

I hesitated to show the pain and tears for fear it would upset him even more, my son has Sensory Processing Disorder, and does really well, but at times his feelings of empathy and concern are over whelming for him.

“It’s an accident, I’ll be fine” I repeated several times, attempting to stretch my jaw from side to side.

Letting the aches and challenges of eating go on and on for months, as each day I thought it would get better, I finally surrendered to the fact that I need to get some help; perhaps there’s something really wrong?

The kids and I went for our routine dental check up and cleaning. After explaining why I couldn’t hold my mouth open as wide as they would have liked, my dentist recommended that I visit with my orthodontist first about the jaw, then perhaps see a specialist.

I scheduled an appointment with the orthodontist, and had extensive x-rays taken; a cool kind of X-ray that circles your entire head giving a panoramic view of your jaw.

From what they saw, there was no “visible” crack in my jaw. Big time relief! Prior to leaving he adjusted my retainer so that the muscles of the jaw would relax, and fall into place. Ah…pretty easy fix, I thought, just have to wear a big bulky upper retainer 24/7 for the next couple of weeks.

As the weeks passed, I felt better but still as I opened my mouth it veered to the right, the bite was off and caused me to frequently bite my lip…not a pretty sight.

I will preface this by saying that I am a firm believer in both acupuncture and chiropractic work when done by a trusting and experienced professional: Next I was off to the chiropractor.

After an in depth consultation and some minor tweaking of my body, the chiropractor said that I have a dislocated jaw, and we need to work on it for some time…Yikes, what is ‘some time’? Did I have the time, could I make the time? Who has time?

Throwing in the towel about now sounded good; I’ll live with the pain.

Knowing that this treatment can make me better, I opted to continue. Thank goodness for insurance and the little positive voice in my head!

So, I scheduled several appointments at a local holistic healing center for adjusting the jaw back into its proper spot.

The treatment at times was definitely painful, however, using relaxing techniques, heat, cold, massage, the adjustments and Advil, I got through.

While in the waiting area of Whole Health Center, I noticed that there was a brochure on the treatment called Facial Rejuvenation. Hmmm…After all these months of pain, I could really use a “lift” in my face, and tackling the fine lines and wrinkles could be a bonus!

I started seeing my acupuncturist for the muscles surrounding the jaw. The chi (energy) and blood had stagnated contributing to the discomfort, getting needles stuck in my face was a welcome relief, if you can believe that!

Feeling much better, yawning with ease, more relaxed around my family, and realizing that if you don’t take care of yourself, there is no way you can be the best mom and wife to your family.
If you are on top of your game, everyone is a winner!

Marla Roth-Fisch, award winning author and illustrator of Sensitive Sam